On Jonah’s Book, and Centering My Disabled Perspective

This post was written for Blogging Against Disablism Day 2017.

In 2013 I began working on what I think of as Jonah’s Book. (It doesn’t have a proper title yet.) I had read Alison Tyler’s Dark Secret Love, and its sequel The Delicious Torment, and begun to contemplate a project playing with a similar mix of memoir and fiction, also centering a kinky character based on myself. She says in the introduction of The Delicious Torment:

“There’s truth here. And fiction. Reality and fantasy. The lines blur at the edges. The seams fray. The satin strands begin to unravel. But not the bindings. Those leather bindings remain hard and fast, until they are met with the right key. This is a novel with me at the center. That is, my heroine is based on me. I’ve sketched her with broad strokes, but at our core we are the same.”

There was something deeply compelling about unabashedly intertwining memoir and fiction. So I envisioned Jonah, a genderqueer character who is based on me, who is also autistic, who also has endometriosis and diabetes, is also a trauma survivor, also Jewish, fat, kinky and queer, and who just moved from NYC to the Bay Area (something I had recently done). It’s about that move, and the very hard time he has afterward. And it’s about trauma, desire, music, gender, disability and ghosts.

Jonah’s Book is non-linear. This choice is about attempting to make the novel match how my autistic brain works, how it threads things together. It’s about matching the way my trauma works, the way time slips and slides and trauma intrudes. It’s about putting the hard parts of the story into a structure that helps hold it. In Jonah’s case, as he loves musicals a lot—they are a special interest and one of the main ways he copes, as they are for me—the novel is organized using them. Each chapter is threaded together by a theme that’s represented and amplified by a lyric from a show tune. There is one show tune for each letter of the alphabet, and the novel is organized in alphabetical order. This structure makes my autistic self flap my hands with joy just thinking about it.

I worked on this novel for a good portion of 2014, and then put it down for a while, as I was struggling more with my PTSD and needed a break. I started working on a romance novel instead. Then I got hit by a car. Everything changed. I stopped writing.

When I went to a disabled queer writing workshop in spring 2015, I got there on paratransit, using my crutches. I was just barely able to get there at all, and access was really hard to navigate. But it felt so vitally necessary to try. I needed to figure out how to write again and I didn’t think I could do that outside of disability space. I hadn’t been able to write anything new since the hit and run, and I didn’t know how to be myself without writing.

I was able to make it to two sessions of that workshop before the access issues became too much and I needed to stop. And I will never forget that workshop experience. It was intimate, and full of intent. The other disabled queer writers were also doing things that melded memoir and fiction. The space held my work like my work had never been held before: all of it, all of me. The first day, the prompt was to write about the last time you/your character moved your body in a way that felt joyous. And I wrote something new for Jonah’s book, something deeply personal and healing.

I want to share the piece of Jonah’s book that I wrote that day, the day I decided that since I’d been hit by a car, Jonah had too; he could hold some of that experience for me. The day I picked up a pen again, after months of not writing, and words flowed.

(As a heads up, this excerpt describes the impact of trauma, a character grappling with acquiring new disability and bodily disconnection. It describes sadism and rough body play. It describes a specific moment in recovery from knee surgery in substantial detail, and references medical trauma and misgendering in a hospital setting. It briefly references the Holocaust.)

I can’t remember feeling joy in my body. I am taken over by the trauma of getting hit by a car, and the surgery, and the recovery, and the daily pain of that, the ache and the strain the not-mineness of my body and especially my left leg. There is a fault line now, and the earth still is split there. I can’t really see across it. I don’t know what joy in my body was like, can’t touch it in a visceral way. I don’t have body memories like that right now. I barely have a body at all.

I know I used to feel joy, can hold that in my mind, even though my body doesn’t know it anymore, at least right now.

Trauma splits memory off into chunks you can handle, buries what can’t be handled. So much can’t be handled, really. Sometimes I think I know better than trauma, think “oh I can handle this.” Get angry that it’s buried. Get angry that it’s broken and partial. I want it all, so much sometimes. I want to be someone who knows their past. I want to be someone who remembers.

I was raised to think that remembering is important. Because I’m a Jew. Because I was raised by activists and writers and historians.

I was raised to forget and disconnect, too. Not from history, so much, but from myself, from my own memories. Those kind of memories were dangerous. Not just to me. Not even mostly to me.

Isn’t that why I was taught to remember, because holding onto history is dangerous in exactly the ways we need?

To reach across the chasm and try to touch the joy in my body feels impossible to do from inside my body now. Feels impossible to do without trying to reinvoke my old body, my body before.

Is remembering a betrayal? Is forgetting a betrayal?

The person who felt that was me, was Jonah. But the person who was in his joy and his body at the same time feels like an alternate universe Jonah. A Jonah who could walk the way he’d always walked since the last big injury, the last fault line. Sometimes slower, sometimes hurting. But the same gait, basically. If I’d taken a different turn that day, walked a different way, I’d still be that Jonah. Now he doesn’t feel like someone I really know. An acquaintance at best. That Jonah is walking that same thumping heavy-booted stroll, his hands moving, his body flowing, more connected than he knew he was.

But however distant he is across that chasm, not even really looking at me, unaware I’m even thinking of reaching for him, he is still me…supposedly. I used to be him, after all.

I used to be the one who moved around a lot. I used to be the one who fetched things for other people that had a hard time moving around. The one that made it a bit easier for my boyfriend. The one that walked to Walgreens. The one for whom the corner store wasn’t really so far at all. The one who could stand and wait for the bus for twenty minutes. It makes me angry how much that Jonah took mobility for granted. His joy, his arrogance, in moving so easily makes me so fucking enraged. I want him to stay across the chasm far away from me.

I can see him now, in his joy, deep in his sadism, kicking and punching and body slamming and just feeling so much himself, so grounded and happy doing it. I can see it so fucking clearly and it’s like there’s a glass wall ten feet thick separating us, not just a chasm but another barrier too. A wall with no doors.

He used to grin so intensely when he was beating someone up. He’d be shining gladness everyfuckingwhere. It was like coming home, being in love with his own body and what it could do, how it could move. The delicious ways it could cause the kind of pain that rooted him, that connected deep. That dance of thud that was so necessary, so juicy in its hotness, so whole.

The closest thing to joy in my body that feels like it happened to me, and not to him, is this:

Two days after surgery, I’m getting ready to go home. I can finally get out of this fucking awful hospital gown. It feels like a travesty to just put on clothes. I want to clean this all off. All of the helplessness and the people touching me that can’t get my pronoun right. All of the dehumanizing minute by minute shit of the hospital, the lack of access to food, the bed pans, the condescension. I don’t want to get dressed and go home covered in the grime of all that.

The nurse is back, that same one from right before surgery. First time I’d seen him, and he works to get my pronoun right. The only nurse who has done that my entire stay in the hospital. He’s had this surgery, told me about it before mine, about the last jump he ever did from a plane. And it feels possible to ask him for the help I need.

He sets the commode in front of the sink, and leaves me alone to wash, with half a dozen clean towels and four washcloths. Alone alone alone. I am so focused on doing this that it takes me a while to feel myself getting clean. To feel attached to my skin. But I do. For the first time, I am claiming my body for mine again, and the sweetness of the water on my skin has no match. I finally look in the mirror, and try to recognize myself. Who is that guy?

Putting on my own clothes is one of the most amazing things I’ve done in so long. Like maybe I could have a little armor again. Like maybe I was mine again, just a bit. My skin alive underneath, zinging against the cloth, happy.